26 March 2013

capturing "ruby"

ruby had a teacher at daycare who is also a skilled artist. "ms. carolyn" often drew pictures of ruby & her classmates that turned out fantastically. carolyn is certainly skilled at capturing the essence of the subject she is drawing.

after ruby's toy story themed party, carolyn was inspired to do a drawing of ruby in her cowgirl jesse costume & she shared it with us. it is so "ruby" (especially the pigtails!) :)

carolyn has an online portfolio of drawings and you can find her other work at http://superstudios.shutterfly.com. she can create drawings from photos, too, & is very reasonably priced. i am searching through photo books to possibly order some works for a few upcoming family events. please take a look at carolyn's portfolio & feel free to contact her if you're interested in having an original piece for yourself!

thank you, carolyn! we love your ability to capture ruby's spirit!

23 March 2013

special saturday sister soirée

i'm doing the alliteration all the way tonight. ;)

ruby & i road tripped up to madison today to meet up with my youngest sister, sam. she happened to be in town with a fellow nurse (& friend) who was taking a big test. so, while her friend was test-taking, we got to hang out with ruby's auntie sam. it was SUCH a great day. we hardly ever get to spend one-on-one time with any of our family from mn because whenever we are visiting up there, it's always a jam-all-your-visiting-with-everyone-into-two-days kind of weekend and most visits overlap. so, the individual time with sam was quite lovely.
she and her fiancé, jesse, gave ruby some thoughtful birthday gifts and then we ate lunch at one of those mongolian grill places. for the life of me, i keep messing up the name, so i'll just skip that part. (ho hut? that just sounds wrong.) anyway, it was scrumptious and we over-ate. this was what sam said her goal for us was when we walked out of her hotel room and i can confidently say that we met the challenge.

when we got back, we splashed around in the hotel pool a bit and then searched pinterest for gender reveal party games. i think we found some fun ones and i am ELATED to say that sam is planning the party for the last weekend of april when we are in mn and can actually attend! it's going to be an exciting evening! hoping my nephew/niece cooperates and shows the goods off so we can be revealed that kind of big news. :)

we traveled home & ruby passed out about 5 minutes after we got on the road. she was pooped and i jammed out to twilight soundtracks the rest of the way home (say what you will about the movies/books but those soundtracks? quality.) it was a perfect saturday. it was only missing a nap but i plan to make up for it tomorrow. priorities, people.

oh, and ms ruby is front facing now in her car seat and she is a happy little girl about it. the few times I turned around to see her today, she was just staring at me smiling. one time she busted out "i see you, mama!" love our growing girl.

enjoy some pictures of our day. hope you have a happy, happy weekend!

20 March 2013

wordless-ish wednesday: grandmotherly love

got this sweet moment of my mom and three of her grand babies over the weekend, cuddling on the couch. it's the little things that really are the biggest things, eh?

19 March 2013

milestones, man. milestones.

it has been a pretty busy few days around here. it started up with ruby turning 2 years old last friday, march 15th. the day flew by, as we were preparing for her big toy story party on saturday & she was also quickly coming down with a nasty cold. since respiratory problems are so prevalent in people diagnosed with SMA, our pediatrician takes any cough ruby has seriously & pretty much treats it right away. so, in addition to running party errands on friday, we also made a quick stop to the doctors office & then the pharmacy to pick up antibiotics before heading to T's sister's & fiancé's apartment building to set up for the par-tay. it was so helpful to be able to set up the party decorations, at least partly, the night before the party.

the party went down on saturday (after yet more errand running, of course!) & it was a great success! it was PACKED. we had around 40 people at the party, including about 12 kids from babies through elementary school. many of our close friends came & it was fantastic to see so many people who love ruby come out to celebrate. it was a quick & crazy party. some of the pictures i have aren't the best because the apartment was so bright (& beautiful!) & I didn't edit them, so hopefully you can make them out okay. ruby got a TON of gifts & it currently looks like toy story exploded in our living took. we had (delicious!) baskin robbins ice cream crunch cake and some snacky-type food. everything turned out & looked great! and I have to give (many, many) thanks to T, Lu, Lisa, & my mom who helped SO much with setting it all up. and also to several of our friends who lent us tables and chairs so we didn't have to sit (& eat!) on the floor. :) last year, after ruby's rainbow party, i said I'd go easy on the big parties in the coming years, but i just don't see that happening anymore. i love planning them & it's a wonderful excuse to celebrate ruby & all she brings to our lives.

ruby also had her two year check up on monday. it went great & she barely cried. yay! she is still on her usual growth curve (10% for weight, 25% for height). no shots either, which was fantastic! basically, it was just a check-in & all is well. the biggest change is she can ride front-facing in her car seat now & use toothpaste with fluoride. like I said, nothing too crazy. but after the last few months we've had, no news is good news for us.

and lastly, ruby moved on up to the next classroom at daycare - the early preschool classroom. I was a little nervous but made sure to put on a happy, positive face for ruby. and she did great! no tears when i dropped her off & when i called to check on her in the afternoon, her teacher said she was having no problems with the transition & she's enjoying getting to know ruby.

so, lots of stuff going on & all of it GOOD. and we like good news. here are some pictures i took the last few days of all the fun we've had.

15 March 2013


only 22 minutes left before this day ends. the day my sweet girl was born, already (and in some ways, just) two years ago.
it still surprises me some days that we have a toddler. but ruby never let's us forget it. she is skilled at the toddler ways already. she is so much cooler than I could have ever imagined she would be.

happy birthday, sunshine girl. we love you, ruby harper.

10 March 2013

babies on the brain

i am, (well, WE are, actually) in a state of limbo right now when it comes to having more kids. the list of what we know is short: we want more. but hey, ya gotta start somewhere, right??

because T & i are both carriers of the gene mutation for SMA, any child that we conceive will have a 1 in 4 chance of also being affected with SMA. and here is the tricky part: there is no way to predict how severe of a case any future child may have, if they have SMA at all. we can do testing but even if we were to find out that a future child has the genetic mutation, there's no way we can know if it's a more moderate to mild case like ruby's (or even milder, though that would be unlikely) or if that child would pass away within a month from their birth. i have read that the majority of children born with SMA are diagnosed with the more severe type 1 diagnosis. we are fortunate ruby is as strong as she is.

however, we do have options.

*we could choose to get pregnant naturally & not have any testing done.

*we could choose to get pregnant naturally & have testing done at 10 weeks, finding out the results a few weeks after the test is done. at which point, if the baby was positive for SMA, we could choose to continue the pregnancy or we could choose to end it.

*we could adopt.

*we could get a sperm or egg donor. (but SMA isn't tested in donors so technically, we could still end up with a donor who is a carrier. which would really be crap.)

*we could do IVF with preimplantation genetic testing & only implant the non-effected embryos.

so, like i said, we have options. none of them sit great with me, to be honest. they all have their cons & pros. i don't feel pulled in one way or another. i feel like i can go back and forth on what i think is best every other day.

we have decided our first step is to talk with a geneticist that dr schroth gave us the contact information for. hopefully he can answer some of our questions and help us come to a decision we feel comfortable with.

because this is a topic that is so personal. in terms of the decision to be made, i don't know how much detail i'll go into on here about it. maybe i will, but i won't know how i feel about it all until we are in any given situation. but i wanted to share where we are with it right now. i know it will all work out one way or another but it is a lot to think about, given all we've just gone through with ruby's diagnosis. it's just one more thing now that won't be easy. but it will be worth it. that much we know.

05 March 2013

ruby & her bff

ruby & i met ava & her mom, becky, at the daycare ruby & ava go to. they have been together, since the beginning, all the way back to the "pear room". :) sadly, they aren't in the same room right now but since becky & i quickly became friends, we all see each other outside of daycare & work hours. last weekend, we played with ava while becky had a work obligation. we had so. much. fun. !!!! the girls were great together, talking to each other, playing together, bickering back at forth at times, & basically having the time of their lives. it was fun to see, for sure. after becky came back, we all went to the craft store & then noodles & co for lunch. pretty much the perfect day with our very good friends. mama/daughter double date for the win!

and here are some shots of the little lady's play date:

01 March 2013

the details

okay, so i jumped on here thursday & quickly updated about the good news of ruby's confirmed (I guess I should say, corrected) diagnosis. but i wasn't too specific about what that exactly means for ruby. so, here are the details!

basically, people diagnosed with sma can be anywhere on the spectrum of strength/weakness, with type 1s being the weakest and type 3s (or type 4 or adult onset) being the strongest. however, within each type there are people who are stronger or weaker than another person with the same type of sma. additionally, two people could have the exact same genetic make-up (in terms of the smn1 & smn2 genes that are affected) but still have different symptoms and prognosis. there are unknown genetic factors that impact those things. so, as you can see, no two people with sma are the same.

clinically speaking, type 1s never sit up. type 2s sit up but don't walk. type 3s walk but then develop weakness overtime. in ruby's case, because she was taking independent steps at one point, dr schroth has diagnosed her as a type 3. ruby is strong, in terms of her respiratory functioning, which is key. overall, ruby looks really good, considering her genetic male up. within the first five minutes of dr schroth meeting and observing ruby, she had diagnosed her as type 3 and told us she will have a normal life expectancy.

it was the only few minutes of the (very) long appointment that i cried. happy, happy tears.

dr schroth did give us information on potential medicines that we might be able to have ruby try. they haven't been proven to work in clinical trials but they have worked for some people. so we may look at those as options in the coming months. there are side effects & ruby would be monitored closely to make sure she's doing ok on the medicines. if we go that route, I will certainly give an update.

other than that, we were basically sent home with a reminder to monitor ruby's cough, if she gets sick. ruby will likely become weaker whenever she has a respiratory virus but then should regain strength after she feels better again. at this point, dr schroth said that ruby doesn't need a cough assist machine or bi-pap machine to help with her breathing at night and/or when she's sick.

we will continue to work with ruby's PT, lisa, and will take ruby swimming often, which is also really good for her. I also have to call and find out where she is on the hippo therapy wait list. I'm excited to get that started. I think ruby will freak out when she's actually on the horse at first but eventually I think she will like it.

other than that, ruby is a typical (almost!!) two year old. dr schroth made this note in ruby's discharge summary:

"ruby is very smart. the only delay she will have will be gross motor and thus, should be disciplined as any other child, including boundary setting."

noted, dr. schroth. noted. ;)